I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Sunday, August 11, 2013

Brent the Great, the One Hip Wonder

I am not terribly tech savvy. But, as there was something graphic that I wanted to share (thus saving several thousand words, if my math is right), I have been required to learn something that most would find most basic...importing photos. Normally, I would just haul my husband in, who is my tech guy for such things, and creative in ways that I am not. For example, I will not likely sweat, picking the font that I use, which I am told, matters. Heck, I cannot figure out how to clean up the text on this blog, in order to have a consistent size of text from post to post. I am sure that Dan would work at it, and make it pretty for me if I asked, but this is supposed to be my deal. I should really grow up and learn something. I will get there, eventually.

So, I was going through our photos, which incidentally, live on our hard drive and in some place called 'The Cloud.' I will not dazzle you with my knowledge of how these things work, because I am a little fuzzy on the details. Just know that like so many others out there, we take photos and they generally remain in digital form. We almost never print them out. But, I was looking for examples that will illustrate the design process for Brent's logo. Because if you didn't know him, it wouldn't make any sense.

It was hard, not simply in a technical way, to look over these pictures, and to see where we have been.

This first photo was taken on the last day of school in June of 2011 at our neighborhood bonfire, which is a tradition held dear in this household. In order to properly kick off summer, the kids go down to the park and burn their old homework assignments while the parents grill off hotdogs and such, a wonderful way to catch up with other families. My kids save their school papers all year in anticipation of this day. Their "burn pile" is pretty big. There is joy in burning that stuff...victory and satisfaction, all of which is quite evident in Brent's pose. Lauren isn't unhappy either.

I look at photos now differently than I did before. This is a great photo, just showing the delight of some children..."No more school! No more books! No more teacher's dirty looks!" (Actually, they enjoy school and the teachers are pretty terrific) But, I look at this now with the knowledge of what is coming in a few short weeks for Brent, and in 6 months for Lauren. I am a little haunted. Can't help it.

Brent was diagnosed the first week of school that fall, and our world fell apart. Brent was incredible, I have to say, making the best of every situation, and finding joy in the small things. Getting discharged after another week of chemo was always cause for jubilation. This photo was taken a few weeks into treatment, less than 3 months after the one above.

I was telling my mom, that going through the photos was shocking, in a way. Even when Brent's hair all fell out, practically overnight, for his birthday (yeah, that was fabulous timing), the physical changes were small, and we saw him daily. He was still Brent. He continued to celebrate discharge, or as we often called it, "parole."

Christmas. Lauren had brain surgery. We traveled to NYC to see about a surgery that might spare Brent's leg. While there, we visited a huge Toys R Us, which was something to see, and apparently, to celebrate.

Brent had his 'giant surgery,' in NYC. And 2 follow up surgeries. And more chemo. Time passed. The seasons changed. There is a lot covered by these spare sentences.

Before Brent finished with chemo, which is an experience so isolating that I struggle to express it, Brent wanted to see his friends. It was beautiful spring day, one weekend off, so we went to a soccer game, to see his former team play. I remember him crutching down the hill to the field that afternoon (which is steep enough to be a challenge, even without the mobility issues that he had) and I worried a bit as I watched, but you have to let them stretch their wings.

Brent had the best day, sitting on the bench with his team and at the end, we took this photo, which still brings tears to my eyes. The soccer club, along with the school and the community here, have been so amazingly supportive of our family.

After chemo was finished, Brent had physical therapy, to try to strengthen his leg, and learn how to walk on his new hip. He returned to school, and we tried to get back to a normal life. We were offered tickets to go as a family to a Browns game by Angela, the Child life specialist, with other families from the oncology floor. We had a fabulous day, enjoying some beautiful weather, doing something that normal families do, and watching the Browns actually win. Believe me when I say that a win for the Browns is cause to celebrate, nearly as much as the day Brent finished chemo.

This time Alex struck the pose:

Brent had an awesome year at school, despite missing the month of January for another jaunt to NYC for surgery to do an muscle flap. But, as I mentioned, May was a little rough when we learned about the donor bone disintegrating, and that he might have cancer again. When we found out that the pathology was clean and that there were orthopedic options involving limb salvage, we certainly celebrated. We were cautioned that it would not be easy, that there would be at least 2 surgeries as part of the reconstruction.

Always a surprise, but a pleasant one this time, Dr. Healey told us after June's surgery that the ligaments holding Brent's femur to the pelvic bones were pretty tight and might be sufficient to walk on, even without an iliac wing. Unsure of what Dr. Healey might do leading into the second (really, 6th) surgery, Brent asked me, if he was left with what is known as a 'flail hip,' could we call him the "One Hip Wonder?" He was giggling like nobody's business. But that is just how we roll here.

Back in New York in July, after it was determined that we would not put in any hardware, Brent and Dan came up with the following, using an image, serendipitously discovered on the internet, and the magic of photo shop:

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Cancer can take his hip bone, but it cannot take his humor (or his humerus-ha!). It may prevent him from playing soccer, but it cannot stop his determination...whatever he decides to do in this life. In doing this logo, he is defining himself, rather than being defined by cancer. It is both empowering and powerful.

When we had scans earlier this month, Brent and I went to the Cleveland Museum of Art on a break between appointments. We got the call while we were there from the hospital telling us that the scans were clean. I snapped this photo at the lagoon. His self-appointed title is "Brent the Great, the One Hip Wonder." Given what he has gone through in the past two years, he can be called whatever he wants. I like it though. I kinda like the logo, too.

I may be facing a flail hip this Tuesday in surgery. Can your son walk unaided? Doc sail I would hop. He wants to do hardware but we did that the first time and I was in constant pain eight yrs, How are your son's pain levels?

Brent can walk without crutches, but this is because the ligaments are tight. He has a shoe lift to help with the discrepancy in length between his legs (which might be addressed orthopedically at some point in the future) He has no pain. Every situation, of course, is different. Do you have an allograft? PM me if you would like. Best wishes to you next week. Ann

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.